Friday morning I called Dr. Soema to see if he could help Quint. Dr. Soema is a pediatrician and applies bio-resonance therapy. This therapy can help with allergies and skin problems. I wanted to make an appointment with him for Melissa because at night she scratches herself and she has been doing this since very small. When I called I got Dr. Soema himself on the line and explained about Quint’s Diarrhea. He suggested to buy Ortiflor and mix that once per day with his feeding. I went to get this immediately. In the afternoon Magda called to report that the dietician had consulted with the gastroentologist and they would send two nutrition supplements from Belgium. The Dietician took my cry for help seriously and I was very happy with that. I informed her also about Dr. Soema and the suggested Ortiflor. She did not see any problems with that.

 

Saturday was a relax day. Grand mom is looking after Quint and I will go with Melissa and her best friend Luna together with her parents to the Summer Festival organized by Studio 100 in the Arena in Rotterdam. It was a great children afternoon. First we went shopping for a short while afterwards to the show. It was great.

 

Tuesday July 1st Magda called with the results of the allergies. Quint has a very serious allergy for cow milk and also for Soya and egg white, but the latter two are in a lighter form. I thought to myself.sure.that can be added as well, pffff. The suggestion was to immediately switch formula. Currently Quint is on Nutrilon Pepti Lactose free which is also good for cow milk allergies but apparently this formula does contain traces of milk protein, so the advice is . Change to Pregestimil. When I wanted to order this formula I found out that it was not available in Belgium anymore. After this I called the distributor in Holland and they informed me that it is not available at the moment but will be available in the future. They suggested flexical instead. After studying the website of Mead Johnson, and comparing the labels of their milk products, Flexical appeared to be a good choice. I printed some of the information to discuss our options with the dietician. So I decided to stay on Nutrilon until next consultation 10 July when I will discuss the options.

Yesterday evening Quint had a high temperature. Just above 39 degrees, but Quint was very energetic and happy. As a precaution I packed some extra clothing just in case the doctor’s would decide to admit Quint to the hospital. Normally my mother joins me on our trip to Belgium, but today my father was driving us. Just before we departed for Belgium I checked Quint’s temperature again and that had gone down. While underway I again put the emla on Quint’s hands and we already arrived at 730 at the hospital. After giving blood, which went well, we could immediately weight and measure Quint. Unfortunately Quint did not gain any weight. But the entire week he still had a lot of diarrhea. Meanwhile I am busy with him the entire day. I try to feed him as much as possible with a spoon, but that takes a lot of time. Luckily Quint does his best, so he gets les through the feeding tube. In addition to the milk we also give him fruit mix in the morning and in the evening vegetables. Quint doesn’t like the readymade fruit and vegetables but he does swallow it. So we continue experimenting which vegetables he likes best and then I prepare it freshly and mix it with the blender.

 

After the weighing and measuring we were seen by Dr. Reding. He said that Quint looked very well. He was not worried about the fever. Quint can of course get a normal fever also. The blood result will tell us more, but the result will only be known late in the afternoon.

 

 

After this we saw Dr. Herman’s for Quint’s diarrhea. She advised to continue with Quint’s feeding. Since Quint had already had special medication two weeks ago, she did not find it necessary to repeat this. She did not have anything else to try, so continue with what we have been doing.

 

She did refer me to the dietician and with her I went through Quint’s feeding schedule. All stayed the same. Keep promoting feeding through the mouth but do not stop the milk feeding, and if he misses volume during the day, we should add it to the night feeding. Day and night Quint is eating continuously. And he still poops a lot..but.the intestines had suffered a lot and need time to recover. But it now takes too long and Dr. Hermans agrees, but we have to continue and hopefully next week it will be better. For now we have to come every week for consultation.

 

When we were done, we had to pass by the pharmacy close by to get some medication and milk after which we drove back to The Hague. Dr. Reding did not find it necessary to stay in the hospital because of the fever. In the afternoon we received a call from Magda and she told us that the blood results were all good. And we can continue with the same dose of prograft.

Prograft is the anti rejection medicine and every time the dose is adjusted according the fk levels in the blood. For now this is checked every week but eventually will be checked every couple of weeks and will be monitored for life.

 

So everything stayed the same. Now let’s hope that the intestines will finally start working and that Quint will be relieved from his diarrhea diapers. Luckily the fever went down and it was not anything serious this time.

 

Quint loves it to take the last bit of granddad’s tea with his spoon. Granddad always drinks his tea very sweet. So that is a nice treat.mmmmmmmmm

Saturday 7 June there was a summer festival on Melissa’s school. They were a lot of activities organized for the kids by the teachers together with the parents. I also helped out with the activities for Melissa’s class. After a long absence it was very nice to be involved with Melissa’s school again. It is a very nice school and we are happy that Melissa was admitted to the school.

June 9 Quint was wearing his orange t-shirt which he got from aunt Lisette. Now he could watch the European championship in style together with granddad. Unfortunately Holland lost this match. 

12 June by early dawn we went again direction Belgium for the next check. In the car about 1 hour before we arrive, I put emla on Quint's hands and tape it with plastic wrap. Compresses absorb the emla too much and the plastic works fine and the emla gets absorbed in the skin. Emla is a crme which makes the skin a bit numb so Quint has less pain while they take blood. We called it wonder cream.

 

As soon as Quint lies on the table and the nurses are ready to take the blood. Quint loses control and starts to cry and kick even the emla does not help. It is more the thought than the pain. And today they had to poke him twice because the first try did not give much blood. Afterwards Magda gave Quint a cookie with which he became calmer.

 

After this it was weight and length. A big disappointment was that Quint lost again 500 grams. First he had gained 800 grams in two weeks and now he lost 500 of them again. According to Magda it is not unusual that children gain a lot and then fall back, no reason for panic.

 

This time we had our consultation with Dr. Cathy Moignee (surgeon). Quint’s stomach looks very well and they are very satisfied with the working of the liver. She referred us to Dr. Dominique Hermans (gastroentologist) in regard to Quint’s diarrhea. Two weeks ago the echo showed that Quint had an inflammation of the intestines and received medication for this, so today we have to make another echo. This time the echo looked all good. Dr. Hermans suggested to continue with the current feedings and the dietician suggested the same. Quint still gets his milk through the feeding tube and also the night feeding. During the day we try to feed him some of the milk mixed with nutrix and roosvice (fruit syrup) with a spoon and this goes well. Quint is also allowed fruit and vegetables and he eats this also. They are small steps but every step is one.

 

After we were done with all consultations and tests we quickly went to the pediatric ward to visit Steven Offermans. We put Quint with Steven on the big bed and they liked it. We did not stay very long because both boys were very tired and it was time again to drive back to The Hague. The trip took a long time again because of traffic. At 1600 we finally arrived home.

 

Quint was happy to be back at grandpas and grandmas. As long as he can ‘walk’ or crawl. We continued with the same day schedule. The only thing that changes for Quint is the surrounding. We still try to give him his snacks and that goes well most of the time.

And then we also have Melissa. She is very happy that we are back and wanted to be brought to school on the bicycle, so we did.

I had 1 week still in Holland. During this time we made use of the excellent skills of grandma to look after Quint and Melissa. This way we were able to do some shopping and we also went out to dinner with Monique, Rick, Karin and Anton and that was very nice.

Because Quint has a bald spot on the back of his head we shaved all his hair on Tuesday. He did not like this and was crying the entire time. Oh well, at least it will grow evenly now. This bald spot was caused by certain antibiotics and by lying in his bed for so long in the intensive care. When we woke Quint after his nap and came down with him, Melissa at first said ‘Now who is that?” Afterwards she recognized Quint. She was very afraid to see Quint completely bald. And Quint still is very angry with us and cried a lot about the loss of his hair. The next day that was over.

 

We kept Melissa from school on Wednesday because we have to renew her passport so we had to go to the city. For Quint I made a pole to hang his feeding bottle. This way Quint can freely move around when he gets his milk.

Thursday 29 May Quint had to go back to Belgium for consultation. Shirley went with her mother because I had to go to Dusseldorf in the afternoon to catch the flight back to Dubai. Ronald and Gerda drove me there.

The consultation with Quint went well. He also was seen by the gastroentologist and it was established that he had an inflammation of the intestines. For this he was given a new medicine. The downside was that this was not available in the hospital not in Holland. This was very stressful for Shirley. After a lot of phone calls they finally found a pharmacy in a village close to the border that carried this.

The consultation of last Thursday (5 June) was good. The prograft dose was increased a little. Quint gain about 400 grams. Next week we have to go again. It is tiring driving up and down. Luckily Quint is not bothered by this. Before the transplant he had to vomit often in the car because his digestion was not good. When we were done we drove to Helen and spend the afternoon there. Quint was very excited especially about the dog.

Shirley told me that the eating of the snacks is going well. He loves fruit, his porridge also but a little less, and veggies preferably not but he does swallow them. Grandma told me that he loves sugar and gets angry if he does not get some. When I was still with them, we sometimes gave Quint a cookie or chip and he sucked on that but did not swallow. Last week Shirley gave him a cheese chip and al of a sudden that was completely gone. In short, like most children Quint also likes the unhealthy stuff best!

So now you are back in the loop. Shirley want to write herself but does not have that much time so I try even though I do not know all the details.

Zo nu zijn jullie weer een beetje op de hoogte. Shirley wil heel graag zelf schrijven maar heeft minder tijd dan ik dus probeer ik het. Ook al weet ik bepaalde details niet.